Adrenalectomy, from pain to promising signs of progress

This is a short note to record the successful execution of a laproscopic adrenalectomy by Dr. Allan Gamagami at Sharp Memorial Hospital on August 16, namely my left adrenalectomy. I talked about the need for this procedure in Cobb’s Got Conn’s, but not because I enjoy talking about myself. Okay, I do enjoy talking about myself, but the point of my writing about Conn’s and primary aldosteronism is to help the many millions of people who might have this condition.

That’s right, recent studies suggest that as many as 10% of people with high blood pressure could be cured by adrenal surgery. In the U.S. alone, where the number of people with high blood pressure is estimated to be 71 million, there could be over 7 million candidates for this procedure. And that’s the funny thing about primary aldosteronism: you may be happy to find you’ve got it. Why? Because treating primary aldosteronism can lower the risk of heart attack and stroke. It can also mean lower blood pressure, or even an end to blood pressure medication.

A Gland Called Adrenal

When either or both of your adrenal glands pump out too much aldosterone your body:

a. retains sodium (we all know too much sodium is not good for blood pressure), and

b. leaches out too much potassium (while excess potassium can be deadly, too little can also have fatal consequences, like a stroke or heart failure due to atrial fibrillation). If you have primary aldosteronism you are likely to experience one of more of the health problems that I list down below.

If your doctor successfully treats your primary aldosteronism, then you may enjoy lower blood pressure with fewer or no medications, plus return to a regular heartbeat, and freedom from muscle cramps. You could well feel more energetic, given the reversal of your hypokalemia (low potassium).

Farewell My Left Adrenal

Thanks to some good old-fashioned medical work by my primary care physician (Dr. Adam Pacal) and gifted nephrologist (Dr. Jadwiga Alexiewicz) it was determined that I was a classic case of primary aldosteronism in which a growth on one adrenal gland is responsible for the over-production of aldosterone.

The culprit was my left adrenal and this was confirmed by some fancy testing, reinforced by my body’s positive reaction to a drug called spironolactone, an “aldosterone receptor antagonist that causes the kidneys to eliminate unneeded water and sodium from the body into the urine, but reduces the loss of potassium from the body.” (NIH)

Because the spironolactone was effective at lowering my blood pressure by several points, it seemed likely that removing the cause of the excess aldosterone would be beneficial. Surgery was scheduled.

Nine days after the surgery I can sense numerous positive changes in my body. For a start, I have not experienced any muscle cramps since the operation, despite not taking any potassium supplements.

Second, I feel either more relaxed or less stressed. (I’m not sure which term best describes my state of mind, and that state of mind might just be a temporary state, but so far I am enjoying it.)

My blood pressure seems to be better controlled, with fewer medications, although it is early days yet. Whether I can be weaned off HBP meds altogether remains to be seen. I am pretty sure that the trauma and lingering pain of the surgery elevates BP readings for days afterwards. I will report back at 15 and 30 days.

What Was Going On?

In the years prior to my operation I was dealing with all of these symptoms of chronic lack of potassium, despite a potassium-rich diet and supplements:

Palpitations, which are sensations of a racing, uncomfortable, irregular heartbeat or a flopping in your chest (that’s language from the Mayo Clinic)

Atrial fibrillation

Weakness and fatigue

Leg and foot cramps

In addition, I suffered from excess sodium despite watching my salt intake. That meant high blood pressure which would sometimes spike and make me feel quite ill if I ate a particularly salty meal (something that is frankly hard to avoid when you travel a lot on business — some restaurants simply lie about their use of salt, a phenomenon that includes some very fancy eateries). Throughout these years, my heartbeat was funky and my medication regimen included five pills a day.

And guess what? For years I had been attributing most of physical ills to an inverse trifecta of advancing age, plus the stress of the financial crash — in which we lost our home and our life savings, plus my wife’s illness and disability. Only when I was back on my feet and settled into a job that I really enjoyed did it occur to me to dig deeper into why I was continuing to have these symptoms. Now, despite the lingering pain of abdominal surgery, I am very glad that I did dig.

Now I need to write up my surgical experience to help folks who discover that they need one of their adrenals removed. A recent study suggests that five percent of high blood pressure cases could be like mine, curable through surgery. The operation is no walk in the park, but in my case it is proving to have been a positive step forward.

I am just curious if you have continued to feel better since the adrenalectomy? I have been undergoing all of the tests since September 2013 (debilitating fatigue was the biggest issue for the past few years). CT scan was a few weeks ago and confirmed an adenoma on the right adrenal gland, and I had my AVS yesterday. I am hoping to schedule a consultation with an endocrine surgeon in the next couple of weeks (and then, hopefully, schedule the surgery soon). I am longing for the day when I have “normal” energy levels again, and since this post was from last August, I was hoping you would update about your progress since then. Thanks!!

Joyce – My adrenalectomy was a big success, curing me of high blood pressure. I went from six blood pressure meds per day to one, which is just a statin. I now get good pressure readings. There have been some side effects, in three areas.

First, the operation itself is a serious undertaking and my abdominal muscles took a long time to heal. Plus your immune system gets hammered by the high dose of antibiotics. I picked up c-diff in the hospital which was not pleasant and took weeks to clear. Next, my body had to get over all of the BP pills it had been taking. That was a positive side effect in many ways. I really did feel a lot ‘healthier’ and more animated after the op. Third, your body has to adjust to the lack of two glands. I have had issues with non-odorous sweating and muscle cramps but my doctor is working with me to iron those out.

Obviously, your mileage may vary. This was the first major surgery I had ever had and the recovery was more work than I expected, but I didn’t actually miss much work at all. Good luck with your tests.

I am glad I came across your website. I just had my right adrenal gland removed 15 days ago. Just like you , I was taking up to 4 drugs a day and I am only 38 years old ! Right now I am weaning off toprol by taking only 12.5 mg a day.

I felt that the surgery was easy the first 1 week and it started to feel harder on my body the 2nd week. Maybe cause I started going to work and my job is physically demanding.
The first week post surgery I felt like I wanted to sleep most of the time. The second week I was a bit more energetic but kinda had dizzy spells. Right now I am entering my third week ans my main problem is my very low tolerance to stressful situations. I get stressed out really quick and I feel dizzy when I do. But once I lie down I feel better. Have you experienced any of this with physical activity or has it been smooth with you afterwards.

Sorry I did not see this sooner. Hopefully your recovery has progressed well. I have heard of other people getting stressed and I put it down to the body adjusting its levels of adrenaline, cortisone, histamine, and other chemicals affected by adrenalectomy. I think there is a period of deficiency, then over-compensation, then back and forth until it settles out.

If you were like me and on a lot of meds for the high blood pressure, your body also has to adjust to life without them. I am now 18 months post-operation and feeling great. I did have problems with sweating and still have a bit of an issue with histamine (itchy nose, running nose, and sneezing, but a basic anti-histamine does the trick for that.

My aldoesterone-renin ratio test came back with high aldoesterone and low renin; significant evidence of aldosteronism, just like the specialist suspected and I have the same symptoms that you described. Now the next step is either a CT or MRI scan to see if there’s a tumour or just over-active adrenal glands. I’m just glad to FINALLY know what was causing all my medical issues and I appreciated your posts; hearing from someone else who’s been there.